Monday, February 28, 2011

Day 120

It feels like a lot has happened since I last updated, yet I don't have any real updates... It's a strange feeling.

We kept the ng tube out all weekend, and of course Holden loved it. He didn't have any vomiting episodes (besides the ones we induced by gagging him with meds), and he was just a different kid in general. You can tell how much he's affected by the tube, poor baby. We did have to put it back in last night, since he didn't eat enough to make up for the calories lost in his tube feeds. Again, that part never stops sucking. Trent and I were both near tears having to put the stupid thing back in. Of course, once he had the tube back in, he started vomiting again. I think our answer has been made more than clear- The tube is the problem.

He was scheduled to have a ph probe test done today, to see if his reflux was bad enough to need a fundo procedure done along with the gtube. (The fundo- or Nissen- basically wraps the stomach around the esophagus and makes the patient unable to throw up.) After researching it over the weekend, we decided we were against him having that particular procedure done. The procedure has mixed results, and many times it causes more problems than it solves. Lord knows we don't need any new issues!

After having the ng tube out all weekend, we know for a fact that he only has reflux/vomiting when the tube is in place. The ph probe would come back positive, even if he doesn't necessarily have reflux without the tube. Since the probe will send back a false positive, and since we already know we aren't doing the fundo, we're not going to do this last test. The GI doctor we spoke to this morning is completely on the same page. Holden will only be having the Ladds procedure and the gtube placed in surgery. Now we'll just wait for the doctors to coordinate and set a date. We hope to have something set by tomorrow, but we'll see.

I don't write a lot about my other two equally fabulous kids on here because this is Holden's blog, meant to follow and document his journey. However, Kaitlyn- my oldest, needs a few extra prayers this week. She has a major test tomorrow, for something she really wants. I know that all will work out how it's supposed to, but please say an extra prayer for her this week if you happen to be praying for our family. As always, thank you. We are truly grateful to be so very blessed!

Saturday, February 26, 2011

Day 118

I started out with the intention of updating this blog every single day, but good intentions don't always lead to action. I don't have a lot to report anyway, so nobody missed much. We spent the rest of the week running various tests, trying to cover all of our bases before scheduling a surgery. Holden was so excited when we headed out of the room each time, probably wondering what treat we had in store for him, only to be strapped down in every machine the hospital has to offer. It couldn't have been a fun week for him, but of course he was amazing through all of it... He always is. To say this kid is a trooper would be the understatement of the year.

None of the tests we've run have shown anything yet. Again, we didn't really expect them to, but there was always the little hope that we'd find something obvious and easily fixable. Of course, there are never easy answers with my little Riddler, and I need to remember that! The last test we'll run is on Monday, and that one won't be over until Tuesday morning. Once we have the results back from that, we'll schedule his surgery and start praying.

He pulled his feeding tube out last night (again), so we decided to leave it out for 24 hours to see how he does without it. The good news is he's not throwing up... The bad news is that he doesn't (can't?) eat enough to keep the tube from going back in. I dread putting that wretched tube back down his nose and throat, but I know he can't survive without it. The tube is yet another thing I have a love/hate relationship with in here.

He's been through much worse, and will likely face down bigger and badder demons again. It almost seems silly to worry about a stupid little tube. But worry is what I do. I've gotten really good at it. I have to catch myself sometimes before the worry turns into a full blown panic attack. Nothing comes easily for him in here, and I want to do any small thing I can to make his life just a little bit better.

But you know, Holden's not really worried about the quality of his life... He wakes up ready to live each morning, like he knows what a gift it is. This is all he knows, and he wakes up with a smile for the world every single day. There is no substitute for genuine love and happiness in life's toughest moments. We adults forget that sometimes, but Holden is already wiser than most. The kid is pure joy. So today I'm enjoying my bare-cheeked boy, stealing all the kisses I can before those perfect cheeks are hidden again behind tubes and tape.

We watch. We wait. We hope for the best. And we pray.

Wednesday, February 23, 2011

Day 115

After running a couple of tests and talking to a lot of doctors today, we've come up with what could be a tentative plan. (We actually don't have anything nailed down, but we're talking about it, which is progress from two days ago.)

We had changed his feeds back to bolus feeds every three hours, hoping that going back to his basics would decrease the vomiting even if slightly. That plan was a fail. He's still throwing up just as much as before, so we know that adjusting feeds isn't going to solve anything. (I could have told them that, as we've tried that approach for three months now, but I guess they need to earn their paychecks. :)

He had an abdominal ultrasound and a small bowel follow-through done this morning. Neither showed anything significant that could be causing so much trouble. Our next tests are a gastric emptying scan and a ph probe in his esophagus, and those will be run later this week and Monday. The GI doctor said she might throw in a couple of extra tests (just for fun, I guess?), but those are the only ones set for now. We'll have to wait and see what those show us.

They brought Holden's case up in the surgical conference this evening, and it looks like we are back on the surgery board. We all feel like at least some of his issues are being caused by the NG tube itself, and that part of the problem can be solved by putting a feeding tube (or g-button) directly into his stomach. If you'll remember, the doctors really didn't want to do any surgeries at all until his transplant, since they don't know what his own heart can actually handle. However, the more everyone discussed it, the more concerned we all grew with putting surgeries off until after transplant. He'll be immunosuppressed his entire life after he gets a new heart to keep him from rejecting it. Even minor surgeries become a much bigger deal in a transplant kid, and the risk/benefit ratio seems to point to doing the procedures now. They'll want to take care of all of his issues at once, so along with the button he'll also get the Ladds procedure to correct his malrotated intestines. If they find any other issues, we'll try to correct those at the same time as well.

We all feel like Holden is in a much better place now than he was for his last surgical procedure. (His last procedure was to take the PD cath out, and he crashed pretty hard and ended up back on the oscillating vent after that one... That's why everyone is so cautious and hesitant to do another surgery. Nobody can say for certain just how much his heart can take.) His main surgeon stressed that he wants every test and scan possible run before we schedule him for a surgery, for two reasons. 1. We need to make sure that we're not missing anything at all that could be causing all of this. Nobody thinks we're going to find anything on the tests, but we're going to run them anyway because 2. The surgeons don't want any surprises. They've already learned that we can count on my little man to find the most remote odds and capitalize. He has never played by the rules, so they want to know what they're getting into before they get into it.

I wish we had an actual "plan", like dates and times set in place, but I'm okay with having a general direction for the time being. We won't finish with his tests and scans until early next week or later, so we won't schedule anything until then. It is such a relief to have an idea of where we're heading, instead of just idly passing the time away in here. None of these are the answers I wanted, as I really don't want to send him back to another surgery, but we'll just do what we do in here and roll with what comes. I think Holden's game for whatever we decide to do... He's far tougher and braver than I am. This kid can do anything- All we have to do is give him the chance to prove it!

Tuesday, February 22, 2011

Day 114

I think perhaps this post should have been titled "How to Lose Friends and Alienate Doctors". Evidently I needed to act like a toddler to get my way. My temper tantrum yesterday morning didn't win me any fans with our current group of doctors (I'm assuming this based on the fact that they didn't come by to see us today), but it did seem to get the ball rolling a bit in other areas. The GI doctors came back in today, and between the two that we spoke with, I think we have the beginnings of a plan. We're going to be running quite a few more tests over the next week, to see if we can better pinpoint what's causing all of Holden's issues. We may or may not learn anything, but at least I'll feel like we're making some progress. (Or at least effort.) I won't go into all of the testing details now, but I'll update more as he has them. I'm praying for answers, or at least some insight... I would love to have both!

And sweet Ren has posted more of Holden's photos on her Facebook page. I'm tagged in a few of them, but if we aren't friends on Facebook you can go to Ren's page to view them. I think they're pretty fabulous, but I'm not at all biased. :)

Monday, February 21, 2011

Day 113

Nothing new to report, besides the fact that we have nothing new to report. Grr... SO frustrating!! Poor Holden has had a rough 24 hours. He was awake gagging and vomiting for most of the night and morning. He finally went to sleep around 11am and is still sleeping. He's woken up a couple of times to cry a little bit, even when we tried to pick him up and rock him, but then rolled right back over to sleep. This is all starting to take its toll on him, and I pray that we find the answers soon!!

Our usual group of doctors came in this morning, and I may have vented a little of my frustrations... Just maybe. I'd be surprised if they don't walk to our door with dread every morning after having to deal with us for so long! My main grievance is that nothing seems to be getting any better or different. We have a good day or two, or even just a few good hours, and then it goes right back to where we were. When the doctor mentioned keeping the "plan" the same for a few more days to see how he handles it, I may have lost it a little bit. Our "plan" is clearly not working, and we already know how he handles it- he doesn't. We keep doing the same thing over and over again, expecting a different result. (Isn't that one of the definitions for stupidity?) At what point do we change the "plan"?? What else are we doing to figure out what the root cause is? Are the doctors here out of ideas? Do we need to take him to a different hospital? These are the questions I had for our doctor this morning. (Let me add that this poor doctor has only had us for three days now... He's suffering for the weeks upon weeks of irritations, letdowns and defeats. Poor guy!) I wasn't trying to threaten them with taking Holden elsewhere, but we may be getting to the point where we need to consider it. Something needs to change... Something has to give. He assured me that Holden will be discussed at their conference Wednesday, where all of the brilliant minds in the area get together, and urged me to be patient until then. Hopefully we'll have some answers, or at least a new "plan" by Wednesday night. I'm content to stick with the status quo until then, but not much longer.

Lastly, many of you have been asking about Holden's pictures... Ren is going to deliver them sometime this week, and I can promise you'll be overwhelmed with pictures once I have them in hand. I've been able to view them already, and they are fabulous!

Our prayer requests today are pretty simple... Please pray for Holden's comfort, wisdom for all of his many doctors, and peace (along with sanity) for Trent and myself. As always, thank you!!

Sunday, February 20, 2011

Day 112

I'm sorry for the delay in posting- we've had a busy weekend, yet not much has changed. Please know that as far as this blog goes, no news is good news! I don't have much to report, as we're still in about the same place as we were last week, and the week before that... Holden seems to be throwing up a little more today, and he doesn't seem himself. I'm not sure why, but something's going on with him. Please pray that it's just a passing thing, and that it will be gone tomorrow! Otherwise he's doing pretty well off of the oxygen support during the day, and only needing it at night. At least we're seeing improvement in one area... It's certainly better than nothing!

We had gotten our hopes up a little bit at the thought of maybe going home this week, but when we look at everything that still has to be done, I think it will be some time yet before we're able to leave. The last thing I want is for us to settle in at home and then end up back here in the hospital, so I'd really like to have as much resolved as possible before we're discharged. That said, there are some things that could take months to sort out, if we ever get it all sorted out, so I know that we'll be going home with many unanswered questions regardless.

All of your prayers and support mean the world to us, and I don't share that often enough.  There are many days when this seems like an endless ordeal, and your sweet words have lifted me up. Even if I don't have time to respond to everyone individually, please know that we read every comment and message, and we are humbled and grateful every day. So thank you thank you thank you, with all of my heart!!

Thursday, February 17, 2011

Day 109

Today was Dr. Lemler's last day of rotation on our floor. As he was saying his goodbyes, he casually mentioned that they might be thinking about sending us home late next week. We had been told that we could start thinking about going home before, but this was the first time a doctor put a timeline on it for us. Any surgeries that we would put him in for are on hold for at least a month while he gets a little stronger, and they don't see any reason to keep us here that long while we're waiting. Of course, we expect to be back soon- either for his abdominal surgeries or his heart transplant, but it would be such a blessing to have a reprieve from the hospital for a little while. I don't think I've even processed it all yet- We could be going home!!! We handle most of Holden's care in here anyway, and theoretically we could do the same thing at home.

I think I'm excited, but mostly terrified. Handling his care in here means that a competent doctor is only a page away if/when I screw something up. At home, we'll be on our own. Don't get me wrong- this is what we've hoped and prayed for since day one. I'm just not sure we're qualified to be wholly responsible for the little man's care. It's difficult enough to take a baby home from the hospital, but taking a baby home who has such widespread issues completely paralyzes me with fear. I pray that we are strong enough to handle the transition and not forget anything terribly important- like the meds that keep his heart working.

The fact that we're even talking about going home in the near future is an answered prayer- nothing short of a miracle. Holden has already earned a lifetime of being a complete hero in my eyes. He is hope. He is joy. He is rocket-propelled potential.

Overall, I am filled with hope for the future along with a heavy dose of fear. I am hopeful for a future full of "near normal" days for Holden. I am hopeful for many years ahead of watching my son grow into a man, of learning who he is and who he will become. I am hopeful that he will have the chance to pay forward the miracles and kindnesses that have been gifted to him.

But there is also the reality of having a son with a broken heart and the unknown that comes with that- How long will he have to wait for his gift of life? How long will his own heart last? What kind of long-lasting effects can we expect from the devastation of his first year? How can I ever stop watching him and worrying about what's going on in that perfectly imperfect body of his, waiting for another shoe to drop? Riddle me that, Batman...

I want my son to grow up and lead a "normal" life, whatever that is... I want him to grow up and marry a girl who I won't think is good enough for him, and have children of his own. I want him to feel for himself how much a heart can expand when you become a parent. I want him to have the chance to make mistakes and learn from them, and become a stronger man of God because of them. I would be lying if I said the fear of never getting to see these milestones in his life doesn't wear me down some days.

It's easy for outsiders to look at him and think he has never been sick a day in his life. It's easy to look at him with clothes on and never know how many days of his first year were spent in a hospital, and how much he had to go through to have a chance at life. He is one year old, and already he has scars that will never heal. I have moments of overwhelming sorrow for what Holden has already been denied at such a young age. I have moments of complete fear that each day might be the day his heart will stop working before we're able to put a shiny new heart in his sweet little body.

But for the most part I am learning to move past the fear and the sorrow. Some days I'm successful, some days I'm not. I am learning to live, love, laugh, and remember every single day to drop to my knees in thanks. I'm a work in progress, but I'm getting better at it every day.

I am truly thankful for the many blessings that are mine, and I thank God each day for loving us enough to give us the chance to love Holden.

God is good, all the time!

Wednesday, February 16, 2011

Day 108

Today found me in much better spirits, thankfully. We had a pretty busy day... I'll get the medical junk out of the way first. While the doctors go round and round trying to decide what to do, it looks like we'll be waiting at least a month or so before attempting to put him in for a surgery- if we even do it then. In the meantime, we're going to try a few different things with the NG tube he has in place now. We're going to try and get all of his calories in through the tube at night, and then pull the tube out every morning. This is both good and bad news... He'll be tube free during the day every day, which will help reduce his vomiting and also encourage him to eat more by mouth. The bad part is that we have to replace the tube- every single night. Ugh. I know there are other families out there who do this, and I'm hoping that it eventually gets easier, because right now it still pretty much sucks. However, we're willing to do whatever it takes to help Holden thrive, and it looks like this is our only option right now. So we'll suck it up and be thankful that we still have a little boy with us to worry over. He's more than worth it.

The best part of our day today was this afternoon... Ren Morrison of Ren Morrison Photography so generously came to the hospital to take Holden's one year photos. (As a side note, he doesn't have any tubes in his face at all in the photos. We pulled the feeding tube out this morning, and he was able to go without oxygen support the entire time we were taking pictures!) We LOVED her, and she took some amazing photographs. She has such a sweet, caring heart- and that totally comes through in her work. She's already posted one of the pictures on Facebook and tagged me in it. If we're not friends on Facebook, go to Ren's Facebook page to check it out. She has such a gift, and we're so blessed and grateful that she shared it with us!! She'll be putting more photos up within the week, and I can't wait to share the rest. :)

Not much has changed for Holden between yesterday and today, but I woke up this morning determined to have a new and better perspective- and I think it worked. I took a page out of Holden's book... Just keep smiling no matter what. Even when the world tells you that you've every right to complain, avoid it.

An optimistic spirit heals.

Tuesday, February 15, 2011

Day 107

We're still waiting on an answer to Holden's feeding tube dilemna. Some feel like we shouldn't do the surgery for the button at all. Some feel like we should wait for a couple of weeks... I'm still not sure why. Some feel like we should go ahead and do it now and get him moving in the right direction.

The doctors who want to keep him just like this don't seem to understand what his life is like. Sure, he has a life, which was more than we could hope for a short time ago. But now it's time to start looking at the quality of his life, and throwing up around the clock is not the quality of life I want for my child. It's not okay to accept less than that just because he's a heart kid. We should be just as worried about his comfort as we would be for a kid who was born with a normal heart... Would any doctor let another otherwise healthy child throw up like this, and just accept that as normal? And he'll be on oxygen as long as the vomiting continues, because we can't work on his lungs when he's already dehydrated and throwing up the meds he needs. It's a neverending circle, and I have had it.

The reality is, it could be a year before Holden gets his new heart. Can we make him live like this for another year? What will the constant vomiting do to his esophagus? How detrimental is it going to be if we can't keep any of his meds down long term? Will his heart get worse? I don't see how it can't... What other options do we have besides an NG tube that is not working for him?? We ask all of these questions and in return we get a lot of sort-of answers, with no concrete solutions. It’s a state of being that is still as maddening as it’s always been.

I feel more than a little helpless today, and I am mad. I don't want to be, but I am. And I don't really care if I'm overreacting at this point. It's just all adding up to a little more than I can take. I realize how selfish this makes me sound. I realize most of my worries have been just that - worries about me. I am so focused on what I need. What I want for him. What I think is fair. Yes, I am selfish.

The truth is, I'm running a little low these days and can feel myself getting very close to the edge. The edge of what? I'm not sure. I think I'm too afraid to look down. Tonight I'll try to regroup. To collect some peace and calm and hold on tightly. Holden needs me cool and collected and focused on what he needs- Not what I need for him.

In the meantime, I'm going to keep my baby as happy and untangled as possible. I'm going to try and remember that in our version of normal, we can only shrug our shoulders and count our blessings. And there truly are many.

So here’s to answers and plans of action. To trusting. To hoping. To asking for prayers to be answered, yet again.

Monday, February 14, 2011

Day 106

I used to think today was nothing more than a silly holiday invented by card companies. (Or bitter women who grew tired of being ignored all year by their husbands.) Now the day has a whole new meaning. February 14th is a Day for Hearts. A special day to honor heart warriors, their families and the many doctors, nurses, surgeons and medical professionals who have dedicated their lives to saving our babies. I never thought I would say this, but I don't think I hate Valentines Day anymore. :)

(I can't take credit for the poem... Someone sent it to me, and I loved it.)

To the over one million families living with broken hearts,
Today is in honor of you.

To the 40,000 babies born this year with a broken heart,
Today is in honor of you.

To the 4,000 babies who will not live to see their first birthday
And to those who have died of a broken heart,
Today is in honor of you.

To the angels among us who mend and care for the tiniest of broken hearts,
Today is in honor of you.

To the little warriors living each day with a broken heart
So we can learn to live with our whole hearts,
Today is in honor of you.

Sunday, February 13, 2011

Day 105

Well, we may have made some progress yesterday afternoon. Holden pulled out his feeding tube again, but it actually turned into a learning experience. (Until we had to put it back in last night... That part will never stop sucking.) Once the tube was out, he didn't throw up all afternoon- until we gagged him while forcing meds down his throat- and he ate more in those few hours than he has eaten every other day here combined! So now I wonder if many of his problems (his digestive problems, at least) couldn't be solved if we took the tube out? That's another rock and a hard place though, as he needs the nutrition we can provide through the tube. Another option is to put a feeding tube straight into his stomach instead of down his throat, but that involves a surgery. It's a minor surgery, but I don't think his heart surgeons will approve any surgery until his transplant. This is yet another frustrating dilemna... We're all trying to come up with ideas, so please pray that one of us will be able to come up with something brilliant!

It seems he rediscovered his attitude along with his appetite yesterday... He was being such a mean little thing all afternoon! He didn't want to go to sleep, so he became intent on ripping the glasses off of my face, trying to remove my nose with his hands, biting my fingers off and headbutting. Bad behaivor, yes- but passion nonetheless. And passion is what I like to see in my brave little fighter. If we can just get his body to match his mind, there's no limit to what this little man can do. It's past time to give his body a fighting chance at keeping up with his spirit.

Of course, we had to put the tube back in last night, and now we're back to our new version of normal. I don't like this version- I hate this version- and I want my feisty little man from yesterday back. This just reminds me that we're not really in a better place, it was just a day of reprieve, but at least I have a ray of hope to hold on to now. If we can get his digestive and respiratory issues under control- even if they're just barely under control, we can start thinking about going home. To our real home. I want him to have the chance to sleep in his own crib before he outgrows it. Thankfully, he seems quite content in the monkey cage here at the hospital, as long as his drugs are delivered promptly. So he sleeps and I type, hopeful that yesterday's accidental little twist of fate provides the jump start we need to find our way to the exit door. I'm well aware that it won't be a permanent exit, that we'll be right back here when he gets his new heart. But those are thoughts for another day. Right now I can only think of right now. Patience continues to wear thin though, so it would be great if we could move along the timetable a bit. It's all up to Holden, and I have a feeling he's just waiting for the chance to show us what he's really made of. Of course, it's just like Holden to decide how this is all going to happen. This is his show, 100 percent, and he's reminding us once again that he's running it.

Saturday, February 12, 2011

Day 104

Luckily, Holden has had a couple of better days yesterday and today. He doesn't seem to be in as much pain, and he's been in a much better mood. He's still vomiting just as much as before, mostly in the morning and late at night, but the abdominal pain doesn't seem to be as much of an issue now. His lungs are still wet but improving. That could change in the next few days, as the doctors feel like we need to cut back on his diuretics yet again. His BUN and creatinine are still creeping up, and they're worried about permanant damage to his kidneys if we continue to let them trend up. We're stuck between a rock and a hard place, because we'll end up having to sacrifice one set of organs for the other. If we cut the diuretics to help the kidneys, his lungs will suffer, but if we continue trying to keep his lungs dry and happy, his kidneys will suffer. Lungs bounce back more easily than kidneys, so that's the path we have to take. It really, really sucks to have to make choices like this. Holden is such a fickle medical mystery, and we're constantly trying to figure him out and solve new problems. I hope and pray that we can get him to a more stable position in every area, so that we might finally be able to think about taking him home to wait for his heart. We're not even close to that yet, so many more prayers are needed.

Thank you to those of you who have been spreading the word about CHD awareness week... I love you! For those who have asked about ways to donate or help in other ways, here are a few options to check out:

The first book we received as brand-new, ignorant CHD parents was a book called "It's My Heart"... It was given to us as a gift, and it was an invaluable resource for us while we tried to figure out our new world of heart defects.

Visit them at to learn more and donate.

"As the country’s leading organization solely committed to CHD research funding, The Children’s Heart Foundation dedicates itself to bringing health, hope and happiness to children and families impacted by a CHD. CHF has funded over $3.6 million of vital, life-saving CHD research since its inception." - The Children's Heart Foundation

Visit them at to learn more and donate.

Remember, even if you don't have the time or resources to donate, you can still help by spreading awareness and reminding your pregnant friends to get an ultrasound at 20 weeks, as well as pulse oximetry testing before leaving the hospital after the birth. A little bit goes a long way!

Thursday, February 10, 2011

Day 102

This poor kid had yet another rough day. I don't know what's wrong with him this time, but he's in pain somewhere. I can't tell if it's withdrawl or abdominal pain or something new entirely, but he's definitely out of sorts and letting me know about it. He's sleeping somewhat comfortably now after his bath and multiple drugs, and hopefully he'll sleep through the rest of the bad. I'm so ready for him to wake up and smile at the world again, like he used to.

And it's official... After 102 days in this hospital, I am losing my mind. (Some of you might be thinking there wasn't much to lose, and you'd be correct.) I've forgotten where home is, and what it's like to live there. When I talked to Trent earlier this evening, I asked him when he was planning on coming home. It was a stupid question, in retrospect, since he was actually at our home. I don't know when I started thinking of this place as home, and I don't like that I've gotten so comfortable with that idea. Looking around the room, it's easy to see that little by little we're becoming a part of this place. Our clothes are neatly folded and put away in the cabinets, our food is packed away in a makeshift pantry, we have our own cups and coffee and sugar... All little signs that we've made ourselves at home. We've settled into routines, and everything here has become so familiar. I have such a love/hate relationship with this hospital, it amazes me that I would ever consider it home. I wonder sometimes if we'll ever get to go to our real home, to take our baby back to his own crib and highchair. I wonder if he's forgotten what home is like as well, and if this is the only home he remembers. I wonder if that's a blessing somehow...

Wednesday, February 9, 2011

Day 101

It seems like frustration is never-ending around here. This past week, Holden's BUN has been creeping up, we think due to dehydration. In response to that, the doctors decided to cut his diuretics. I was against it, and was very vocal about my opinion, but the doctors went ahead anyway. My concern was that cutting his diuretics when he's already on oxygen would only increase the fluid in his lungs and cause more respiratory issues. We noticed last night that his face is puffier than usual, his breathing was labored and rapid for most of the night, and his xray showed a white-out again. All of this means that he's retaining fluid and putting more strain on his lungs and heart. The doctors decided this morning to go back up on his diuretics, and possibly even add IV diuretics to get back ahead of the edema. This is all really frustrating to me, because I feel like they should have listened when we told them this is what would happen. I know that they're the ones with medical degrees, but we know our child, and we've been down this road more times than I like to recall. We know exactly what happens when we decrease his diuretics, and unfortunately we were proven right again. It's hard to triumph in being right or to even do the "I told you so" dance when Holden is the one suffering the consequences. :(

His vomiting still isn't under control, but it's really episodic now. He'll go for hours without throwing up, and then have a few hours where he throws up over and over again. We had hoped that this new combination of meds would be the magic combo, but it doesn't appear that they have helped much. I suppose we should be thankful that he's not throwing up around the clock now, instead of focusing on what's still wrong. Something to think about...

Something else to think about (I'm a master at the segue :)... Until the testing and screening I talked about in my last post becomes mandatory, you should know what to look for in your baby or child to indicate a problem with their heart. Some babies, like Holden, are almost completely asymptomatic, so it's vital to see a pediatric cardiologist if you or your pediatrician notice anything wrong at all. The most common symptom is slow/difficult eating, so pay attention to your instincts if you feel like something is not quite right. Other signs and symptoms may include sweating while eating- due to the exhaustive effort, excessive sleeping from constant fatigue, labored or rapid breathing due to build-up of fluid in the lungs, and cyanosis- a bluish tint to the skin, lips, nails and extremities. Your child may have all or just a few of these symptoms. And remember, most heart defects don't cause chest pain or any other painful symptoms.

I hope nobody I know and love ever needs this information, but please keep it in the back of your mind. If it helps even one child, I've done my part. :)

Tuesday, February 8, 2011

Day 100

Ouch... That was a hard title to type. I don't know why, but the 100th day seemed like such a scary milestone to me- One that I never wanted to meet. However, I am beyond thankful for every day I have with him, whatever the setting. If it takes 100 more days in here, we'll gladly serve them to be able to bring our baby home. He is truly a miracle, and far braver than me. So many mothers would give anything to be with their babies for one more day, even in a hospital. When I look at it that way, it seems selfish of me to complain about being here.

Many CHD families learn about their child's heart defect during pregnancy. However, there are countless others who don't find out until after their child's birth and for some it is too late. I didn't know about heart defects before Holden was born, and I didn't know any of the signs to watch for either. We took him home thinking he was a perfectly healthy baby. If his heart weren't so perfectly imperfect, we could have lost him before we even knew what was wrong with him. We were lucky. Some families aren't as fortunate. It breaks my heart every time I read a story of an undiagnosed baby passing away. News like this makes me so angry and rips my heart to pieces because it shouldn't be this way. More should be done to prevent this from happening. No mother should have to leave the hospital with empty arms, or be forced to say goodbye to her baby after only a few short hours or days. Many OB/GYN's are still not performing routine 20 week ultrasounds (mine included) and many hospitals are not performing pulse oximetry testing (O2 reading) before sending babies home. If more parents found out about potential CHD's at the 20 week ultrasound, surgeons and medical staff could be prepared at the time of the birth. Countless lives could be saved. (And it's one more chance to see your sweet baby on the monitor... Why pass that up??) The pulse oximetry test could catch defects that are missed by that ultrasound. These are both non-invasive tests that only take a few minutes. INSIST on having both tests, even if they're not required. (And they probably won't be.) It could save your baby's life!

Monday, February 7, 2011

Day 99

Things are looking pretty much the same around here. Holden's throwing up a little bit less, which is great, but he's still showing signs of being severely dehydrated. We're trying unsuccessfully to push the Gatorade, but he's not loving it. Maybe that will resolve itself if he can keep fluids down for a little while. We've had a couple of days before where the vomiting let up briefly, only to return, but I'm hoping and praying that this reprieve will last!!

In other news, today marks the first day of CHD Awareness week - February 7th-14th. This week is an effort to educate the public about Congenital Heart Defects.

40,000 babies are born with heart defects in the United States every year. Each day, out of the 10,830 babies born in the U.S., 87 will be born with a congenital heart defect. Isn't it time to find out why?
Awareness is desperately needed to fund research into the nation's #1 birth defect. A fraction of a penny out of every dollar put towards CHD research isn't good enough. More can be done.
If you're looking for more information, all three of these are reliable places to look:

Saturday, February 5, 2011

Day 97

As I typed the title to this post- Day 97- I cringed a little. We're about to hit the triple digits in days, and that's enough to depress me on this Saturday night. We seem to be in somewhat of a holding pattern, repeating the same things day after day. Of course, Holden is still throwing up, and he's still on oxygen. (I really hate typing that line over and over again... I'm ready for a new one!) The only good news in all of this is that he is managing to gain tiny bits of weight... He's on an elemental formula now, so he's absorbing the nutrients more quickly even when he throws up his feeds.

We've had to decrease his diuretics because he's dehydrated and his kidney numbers are starting to look bad again. His lungs are still wet, so decreasing his diuretics won't help that situation out at all, but we don't really have a choice. We'll just have to circle back around to his respiratory issues once we get a handle on the digestive problems. (If we ever get a handle on them.)

The GI team came back in to consult today, and they're just as stumped as the rest of the doctors. Apparently we've already tried everything they would recommend, and they don't have much left in their bag of magic tricks. Any other tests/procedures they could do would be invasive, and the cardiac doctors have vetoed anything involving anesthesia unless absolutely necessary. We may soon get to that point, but for now the risks aren't worth it. So we've added a new med, an antihistamine, that may help. I won't even pretend to understand how an antihistamine works on intestinal motility and vomiting, so I'll leave that part to the doctors. I continue to pray that they'll find something, anything, that will work for him, but I can't get my hopes up too high anymore. I hope someday we'll be able to look back on this and not even remember how hard it was, but we're not there yet.

His withdrawl seems to be better under control now, since we've stopped weaning and changed his methadone and Valium to IV. The pain management team thinks that in addition to us weaning the doses, he was also self-weaning by throwing up his meds, and that creates a scary cycle. He seems to be doing much better on the withdrawl front now.

I'm sorry to have kept everyone waiting on an update, but we've been having issues with the laptop. You can thank my cousins Jack and Jennifer for this one, because they brought me their laptop to use while they fix mine. They also brought bags of goodies for us and stayed to visit for a while... Jack attempted to take apart my laptop in the hospital room, but the job was a little more complicated than he anticipated. I would be going through internet withdrawls by now without their help. :) We are reminded daily how incredibly blessed we are by our amazing family and friends!

I'm sure everyone has big plans for the Super Bowl tomorrow, and I hope everyone stays safe in the nasty weather. Holden doesn't care who wins, but he'll be forced to watch the game anyway. You have to start them young. :)

Thursday, February 3, 2011

Day 95- Birthday Recap

Holden is so very loved around here. Doctors, nurses and surgeons came by all morning to wish him a happy birthday, and he even got handmade birthday cards from Dr. Ikemba's sweet little girls. Two of his nurses brought him gifts and a birthday banner, and all of that was before the family got here with presents and cake. He may not realize it yet, but I don't think a little boy could ever exist who is more loved than mine. :)

He wasn't feeling his best yesterday, but we still tried our hardest to make it a fun day for him. We're pretty sure he's going through withdrawl again, as we've been weaning his methadone and Valium pretty steadily the past week. The withdrawl makes him shaky, sweaty, yawny, pukey and just plain crappy feeling. Poor kid... Even after a rescue dose of Loritab, he woke up fussy and feeling pretty bad. :( We still had his little party though, and there were a few fun moments in the day.

I wish I had gotten pictures of everybody who was here, but I wasn't that good. Here's what I did get...

Hanging out with Bobby before the party starts.

 Not sure if we like the hat...
...Very sure that we don't like the hat.
 Not too sure about the rest of our hats either.
 His sweet nurses, Dee Dee and Whitney, brought in the banner and presents.
 He loves the fire truck! (It makes noise, along with everything else he owns.)
 He's figured out this opening presents business.
 The hat isn't so bad when it comes with presents.

 Bobby and Laci
 Party on, Wayne...
 The Horton cake my mother-in-law made for him out of cupcakes... Isn't it adorable?? It took her half a day to make, and it was perfect!
 He wasn't sure about this part either.
 He was quite sure he didn't like us singing to him. We didn't get past the first line. :)
 He poked at it a little bit, but never ate any of it. :( We still have a few left over, and I haven't given up!

 I really wish he had been looking at the camera... I never get to be in the pictures!
 The second attempt, after his evening nap.
 He didn't scream in terror, but he still wasn't impressed. Oh well!
He finally found a hat he didn't mind.

Wednesday, February 2, 2011

Day 94- Happy Birthday Holden!

Happy birthday, my little Braveheart... I truly cannot believe a year has passed since we first started out on this journey with you. So many times, I have wished to trade places with you... But I'm not sure I could have handled all of this as gracefully as you have.

You have shown unimaginable strength- far beyond your years. Your first year of life has been filled with obstacles and challenges, and you've risen up to meet them all. You are brave. You are tough. You are a miracle.

You have such an exceptional spirit. You have a unique power to inspire faith in the doubtful, put our priorities in order, and teach about hope- and what it means to fight for what matters most. I'm certain that your exceptional little spirit will be exceptionally spoiled for the rest of your life. How could I possibly deny you anything after seeing you go through this?

Your next year will be one filled with hope. Hope for the strength to get through the unknown. Hope that the perfect heart will be graciously given to you at the perfect time. Hope that tomorrow will come, and the next day, and the day after that. Hope that you will exceed everyone's expectations of you and remind us every day that prayers are answered. Our every hope for you may not be realized, but each day that you wake up and smile at the world is a miracle. And in that there is hope.

I watch you as you wrap everyone you meet around your little finger. You charm the Crocs right off of those nurses, and you have a fan club of doctors who come around just to see you smile. If I had to pick one quality you possess that I adore above all others, it is your ability to keep smiling, despite it all. You smile, you love, you trust, you fight- stealing hearts everywhere you go. Well done, little man. I am so proud to be your mommy, and I am eternally grateful that I get to call you mine.

Tuesday, February 1, 2011

Day 93

We didn't make too many changes this morning, and everything is about the same. We're trying some different timing on his feeds today, and going up on one of his heart meds to see if that helps out his lungs at all. Otherwise, we're just enjoying his good times and trying to comfort him through the bad.

The snow and ice outside doesn't affect me much, as I'm stuck on the 8th floor of a hospital regardless, but I hope everyone else is staying safe and warm today!

He loves being rocked these days.
 I love the look in his eyes in these... You can tell he was in a great mood!

 By the age of 1, most parents are trying to get their babies off of the bottle. We, however, are super excited about anything he'll take by mouth!
 Enjoying his walker, for all of five minutes. His legs are still too weak to move him around like they used to, and he gets really frustrated. We'll just keep trying!